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Why I Won't Stop Talking About My Son's Dystonia

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Yes, I am that mom. The mom who fills up your newsfeed with those annoying posts and is always talking about that word you’ve never heard of before: dystonia. When you first heard it, you probably thought it was a country, which caused you to wonder why I’d be raising awareness for such a thing. And then while glancing at one of my posts or listening to something I said, you realized dystonia is not a country. It’s a disorder my son, Andrew, has been diagnosed with. You probably thought to yourself, He looks pretty normal. He must have been misdiagnosed.

If you take the time to watch Andrew, you’ll notice he moves differently than other children. He is stiff and wobbly. His knees don’t seem to want to bend when they’re supposed to and other times they bend when they shouldn‘t, causing him to stumble or fall. His arms twist in toward his chest or in a contorted motion out to the side. The more Andrew moves or the faster he moves, the worse those strange movements are. Even when he’s sitting in one place and playing with toys, you can still see these strange movements. That’s dystonia.

According to the Dystonia Medical Research Foundation: Dystonia is [a movement disorder] characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may ‘overflow’ into adjacent muscles.”

We knew as soon as Andrew became mobile that he didn’t move like other kids. He was delayed in reaching milestones. He was wobbly and fell down a lot. His hands moved in strange ways sometimes and his arms would twist in toward his chest or out to the sides as he ran. We began to ask different doctors about Andrew’s movements and often got the same response: “He will grow out of it.” But Andrew’s abnormal movements became more prevalent to us when Andrew’s little sister, Maliyah, arrived. As Maliyah grew and became mobile, we noticed that she was starting to move with more grace and ease than Andrew. He began having a hard time keeping up with her.

Approximately one year went by. One night we went to Wal-Mart, and as we were leaving, we noticed he suddenly developed a significant limp. It took just a few minutes for us to drive to the restaurant for dinner. As we were walking from the car in to the restaurant, we noticed his limp was even worse. We couldn‘t think of anything that would’ve caused that. By the time we got home, he wasn’t bearing weight on his right leg at all and had started to complain of pain. We went to the emergency room, but the doctors there couldn’t find anything wrong with him, so they scheduled us an orthopedics appointment. At the orthopedics appointment, we were told Andrew probably had a toddler’s fracture that was so small it wasn’t even visible on x-ray. We told the doctor of our concerns with Andrew’s walking and other movements, and they said the same thing: “He will grown out of it.”

Another year went by. Our concerns with Andrew’s movement grew as he grew. We told various doctors about Andrew’s strange movements. The doctors often agreed, saying they noticed he didn’t move quite the way he should for a child his age but were unsure what to do about it. We were referred back to orthopedics once again. That doctor again assured us that there was nothing wrong with his bones, and therefore there was nothing she could do for him. We begged the doctor to watch him try to run in the hallway and she agreed. As the doctor watched Andrew run, he wobbled and was unsteady. His arms alternated the usual twisting motions we were familiar with. She said, “Yes, I see what you’re talking about. I think I’m on to something.”

She examined him further and told us we’d been referred to the wrong clinic; we needed to go to neurology. She thought he might have cerebral palsy, but during Andrew’s neurology appointment, the neurologist said that word we weren’t familiar with: dystonia. In the weeks to come, Andrew had blood work, a brain MRI and a lumbar puncture, all of which came back normal. The diagnosis of cerebral palsy was ruled out and Andrew was given the official diagnosis of idiopathic generalized dystonia. We were devastated to find that Andrew did have dystonia; it affected his whole body, and the doctors didn’t know why or how to fix it.

Andrew has good days and bad days. Some days you hardly notice anything different about him, and others he struggles to walk and complains of a lot of pain.

So yes, I am that mom. The mom that fills up your news feed with those annoying posts and is always talking about that word you’ve never heard of before. Dystonia. And I will continue to be that mom and raise awareness until a cure is found and my son, along with all others living with dystonia, can have the freedom to move. I’m a mommy on a mission.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

Originally published: September 24, 2015
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